One major challenge for the new Patient Centered Outcomes Research Institute (PCORI) is to make good on its stated mission to improve health care by producing evidence “that comes from research guided by patients, caregivers and the broader health care community.”

In order to “guide” that research, patients will offer their time and their experience to serve on various panels alongside scientists and other stakeholders, many of whom have competing agendas. This means that representing the patient perspective in research governance, priority-setting, design, execution and dissemination is not a good task for the shy or the ill-prepared. Not only do you have to have reflected on your own experience as a patient, but you have to have a good sense of how much you can generalize from that experience. This is, after all, not about you. It is about us – all of us patients.

Sometimes this means gathering information from others who have a similar diagnosis and who have been treated with similar approaches. What was getting chemotherapy for breast cancer like for you?

Sometimes it means learning about how people with different kinds of heart conditions or kinds of cancer experience their diagnoses and treatments or health care in general. What happened when you were discharged from the hospital?

It always involves having a reasonable grasp on the research process; not only what constitutes a research study, but also how scientists formulate questions and design studies and how decisions are made to pay for those studies to be conducted. How does the government decide what research to fund and how is this different from how the Juvenile Diabetes Research Foundation decides what to fund?

A general understanding of the larger context in which the research is being conducted is critical. Where in the process from basic to implementation research do comparative effectiveness studies fit?

And it is important to understand where in the discussion the patient perspective will be most helpful in producing an outcome that will contribute to treatments and care that help us live as well as we can for as long as we can. I can’t say much about the power analysis, but I think it’s really important for patients to know how long they can expect the cognitive and neurological effects of this treatment to last.

Learning all this takes time, as does traveling to meetings and attending them. The meetings are not always pleasant: including the patient perspective in research remains a foreign concept to most scientists and as a result, our views may be sought but ignored as the other participants continue doing business as usual. Jargon abounds. Everyone else seems to be on familiar ground.

Getting trained to become an effective patient representative is a real commitment. Many of us who might do so are in fragile health. Others of us are barely managing to juggle our jobs and our illnesses. We are rarely paid for our time. Professionals who run programs that prepare and train patients to participate in research/grant reviews report that finding patients of relevant ethnicity and age who are willing to participate is difficult.

Organizations and institutions committed to including patient perspectives in the full range of research activities have racked up considerable expertise over the years in how to build and maintain the knowledge and skills of patients so they can contribute to various stages of the research process. The Department of Defense breast cancer initiative, Project LEAD, the FDA, the Juvenile Diabetes Research Foundation, theNational Institute of Mental Health, the Center for Medical Technology Policy and the manygroups involved with community-based participatory research, among others, recognize that the mere presence of a patient in the room where deliberations are taking place does not constitute “including the patient perspective.” They know it requires considerable resources, creativity and close attention to expanding the pool of patients who are prepared to participate.

And so it was a good sign that the Patient Centered Outcomes Research Institute (PCORI) issued its first call for proposals not for comparative effectiveness research projects, but rather for studies about how to ensure that the perspectives of patients infuse every aspect of the PCORI agenda and the work it funds. This is an admirable first step. And the call for non-traditional reviewers to join NIH study sections to evaluate those proposals is a good second one.

But many of us patient activists and advocates are waiting to see whether all this patient-centered rhetoric is going to be acted upon in the long term.

I recently chatted with a number of colleagues who regularly serve as patient representatives in the research process about PCORI’s potential to embed our experience and to reinforce effective patient participation in research activities. The following factors were raised again and again as key determinants of PCORI’s success in achieving its commitment:

1. How high PCORI sets the bar requiring patient involvement in all activities, from research priority-setting to proposal reviews to participation in all funded research.

2. What PCORI does to train the researchers it supports to engage patients and our surrogates in its funded activities.

3. What PCORI does to expand the pool of sophisticated, trained, committed patients, caregivers and other activists to participate in all manner of research-related activities.

Each of these depends and builds on the other two. Not one of them will work without a full commitment to the others.

Those of us who have been serving as patient representatives in research activities for years can tell you with 100 percent certainty that if researchers are not required to work with us to define patient-centered outcomes and design research to measure them, they will not do so. If the signs of success of patient involvement in patient-centered outcomes research are not clearly defined (they are not now), methodological standards cannot be set to achieve them. And if researchers aren’t educated about how to engage us meaningfully at each step of the process and given technical support to do so, they will be unsuccessful in conducting research that reflects our perspectives.

Similarly, if more of us patient and caregiver activists and advocates are not trained and supported to participate productively in every aspect of the various types of research activities supported by PCORI funds (including the Methodology Committee of PCORI, which currently includes no patient representatives), our presence will contribute little of substance.

For PCORI to make good on its commitment to patient-centered outcomes research is an ambitious, heavy lift. My colleagues and I are in awe of the resources and leadership that will be required to do this. And we agree that doing it half way or poorly will waste our valuable time and taxpayer money.

While I in no way claim to speak for all patient advocates, I believe that many of us are just plain delighted that the rhetoric of patient-centeredness that made the funding of PCORI palatable to Congress appears to now be taken seriously by the institution that will administer these funds. We have both high hopes and nagging fears that this big chance will be squandered, that our concerns will once again be trumped by professionals with technical expertise, authority and money – and that patient-centered outcomes will continue to be seen as nice to consider but not necessary to identify and measure.

Jessie C. Gruman, PhD is president and founder of the non-profit organization Center for Advancing Health. Her experiences as a patient — having been diagnosed with five life threatening illnesses — informs her perspective as an author, advocate, and lead contributor to the Prepared Patient Forum blog. Her most recent book, AfterShock, helps patients navigate their way through the health care system following a serious or life-threatening diagnosis.

1 Response for “Getting the Patient’s POV”

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